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Monday, June 21, 2010

What Now? Ten Tips for Families with a New Autism Diagnosis

I’m sure the person who said hindsight is 20/20 didn’t have a child with autism. (Actually, I’m sure he or she didn’t have a child of any kind.) You’re never finished being a parent: as the Jason Robards character said in the movie Parenthood, “you never get to spike the ball and do your touchdown dance.” I have no idea if some of the things I’ve done will end up having helped or hindered my attempts to attain that Holy Grail of Parenthood: happy, healthy children.

Of course, this has nothing to do with autism, and everything to do with just being a parent, but there are challenges (and joys!) specific to parenting a child with autism, hence the birth of this group and this website.

Shannon, one of The Thinking Guide to Autism's founders, asked me to put together a list of things I wish I’d known when my son was first diagnosed. I have followed this request to the letter; what follows reflects my personal experiences and observations, and -- more often -- my own mistakes. My list includes both the emotional and the practical advice I received, and some I wish I’d received.

All the usual caveats apply: Your-Milage-May-Vary, n=1, etc. I’m sure other parents of children with autism have many more tidbits to add, and others will disagree with some of the items on offer here. I plead guilty to any sins of omission, commission or offence; these are mine alone and not attributable to the wise and good ladies and gentlemen associated with The Thinking Person’s Guide to Autism.

What Now? Ten Tips for Families with a New Autism Diagnosis

1. Take a few days (at least) before making any important decisions.

The first thing you need to deal with is how you feel. Even if you think you’re prepared for the diagnosis, you will have lots of emotions to process, and some of them may surprise you. I know I was blindsided by grief I never thought I’d feel -- we’d known for years before the “official” diagnosis that our son was autistic -- compounded by guilt for feeling it. There were a number of other emotions, too, some expected, some not, and this roiling sea of feeling sapped my reason for a short while. My rational brain knew this was normal, but that didn’t obviate the need to let myself just float without resistance on that sea for a bit before I could start actively navigating.

2. Try to plan some alone-time with your partner (if you have one) for a week or two after diagnosis.

If you’re the talky type, you’ll want to talk about your feelings. If not, you will have some practical issues to discuss (see items below) -- either way, it’s good if you can do it without the usual distractions, and without your child listening in to your discussions.

3. Decide who you’re going to tell.

When my husband and I first realized our son had “issues,” and with the dawning realization that these “issues” were most likely related to autism, my husband felt strongly that we should tell nobody that didn’t absolutely have to know. I felt otherwise, so we hashed it out and came to an agreement. It was important because if either of us had simply assumed how the other felt, it might have fostered resentments (as assumptions often do) and we would have missed an opportunity to understand how each of us felt about our son’s autism. My husband’s feelings have changed over time, but I am glad I respected them at a time when he was dealing with his own emotions surrounding our son’s diagnosis.

4. Don’t focus (too much) on the future.

No parent, whether of an autistic or typically developing child, can help worrying about the future. It’s especially easy to let these worries -- will my son live independently? will my daughter ever speak? -- niggle at the corners of your psyche and are especially persistent in the weeks just after diagnosis. Let those worries out to play, but learn to pack them away most of the time, or you’ll have trouble focusing on the short-term goals that may actually impact the future.

Just as importantly, focusing too much on the future can prevent you from enjoying who your child is today, and from celebrating her achievements. I think we all fall victim to this on occasion, but my observation is that those who are most concerned most often with “big picture” goals -- “curing” the child’s autism for example -- travel the hardest road.

5. Remember that your child is a child, not a project.

It sounds glib, I know, but it’s a mistake I’ve made again and again. It’s so easy for me to get caught up in the checklist -- the next appointment, the next goal, the next letter to be written, the next battle to be fought -- I sometimes forget that both my kids need me to be Just Mom as well as Warrior/CEO Mom.

Moreover, there are aspects of my son’s autism that I sometimes enjoy because they are uniquely him -- his habit of relating everything back to his obsession with boats and cephalopods, for example. While I do want to help him learn to ameliorate aspects of his behavior that cause problems for him, I have to be careful to remember that some of those things are not just “problems to be solved” -- they are part and parcel of who he is. The next task, the next goal, will always be there, but his childhood will not, and I don’t want to miss it.

6. Get a few binders and a three-ring hole-punch, and decide on a single, accessible place to keep them.

You probably have a lot of paperwork related to your child already. There will be more -- much more -- and you will need to refer to it all at one time or another.

I started off keeping my son’s records in separate hanging folders -- one each for school, for medical issues, for evaluations, etc. -- and it ended up a big, unruly mess because all those things were interrelated and I frequently needed to refer to something from each folder in the course of one task or meeting.

Save yourself time and hassle by keeping it all organized in one place from the very beginning. Binders are great because they are portable -- you can bring them to meetings, and they’re easy to grab in case of emergency (we live in earthquake country, so I think A LOT about portability.)

7. Keep a record of every interaction you have with schools, therapists, doctors, etc. regarding your child, even if it’s just a casual discussion in a hallway. Make copies of every questionnaire you fill out.

Yes, it seems like overkill, but together these things will give you a more complete picture of your child’s progress than a simple collection of official reports and test results. In our house, autism is a constant tide of leaps forward and steps backward, and sometimes even a casual comment by a teacher, for example, can help pinpoint the genesis of a problem or the catalyst for a burst of achievement.

8. Get familiar with laws that affect individuals with disabilities, especially those dealing with special education.

One of the biggest challenges for every single family I know that has a member with autism is getting necessary services. I can almost guarantee that this will take up a disproportionate amount of your time and worry. Knowing what services your child is entitled to receive is up to you -- nobody is likely to offer them unless you ask, and unfortunately, you may need to fight for them.

My husband is a federal attorney, and even he was at sea regarding this at first. In the U.S., I have found the Wrightslaw website -- www.wrightslaw.com -- and their books very helpful.

9. Find a local support or advocacy group.

Even if you don’t make friends through the group (I didn’t), they are a good source of information on local resources -- schools, camps, and professionals like pediatricians, dentists, barbers--who are especially good with autistic kids.

One caveat: support groups -- especially the online type -- are often full of discussions of the latest miracle autism “treatments” and “cures” (scare-quotes intentional). As tempting as it may seem, don’t get sucked in by these; the “treatments” will cost you time and money, and may even be harmful, and getting involved in discussions about them will only waste your time.

In the beginning, you may feel guilty if you don’t pursue every possible lead in hopes of helping your child, but try to let it go. There are too many for you to try them all, and the vast majority are useless at best. If you later decide you want to pursue any of them, they will still be there, and you’ll have a better sense of what’s likely be helpful for your child.

10. Meet with a financial planner -- preferably one with knowledge of disability planning.

This is one area where Item #4 doesn’t apply. You need to make a financial plan for the near and possibly the distant future. This is a good idea for every family, but having a child with autism can add extra financial stress, and unless you are yourself a financial wizard you will need professional guidance.

Even if you take my advice and stay away from DAN! doctors and others offering unproven therapies, having a child with autism can be expensive. Evaluations, therapies, special equipment, respite care, medications -- chances are you’ll need to pay out-of-pocket for something now or in the next few years.

You also need figure your child’s unique needs into your basic estate planning -- you may need to consider carrying extra disability or life insurance for yourself and your partner. You definitely need to think carefully about who may be able to care for your child in the event of your death -- it might not be the same person/people you would chose to care for a typically developing child.